Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
Discuss the article on the Forums.

How a UK teen diagnosed her own rare illness - written off as 'CFS'

Discussion in 'Other Health News and Research' started by natasa778, Aug 28, 2016.

  1. natasa778

    natasa778 Senior Member

    Messages:
    1,773
    Likes:
    2,456
    Original article behind a paywall in The Times http://www.thetimes.co.uk/article/how-a-teen-diagnosed-her-own-rare-illness-gct2gd2qx

    but more details available here: Dying 13 Year Old Diagnoses Her Own HPV Vaccine Injury that Stumped Doctors

     
    ahmo and alex3619 like this.
  2. Cheesus

    Cheesus Senior Member

    Messages:
    1,244
    Likes:
    5,579
    UK
    Don't worry, your daughter only has an incurable, highly disabling, life-changing disease.

    Good on her for putting in the effort that so many doctors won't.
     
  3. AndyPR

    AndyPR Senior Member

  4. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

    Messages:
    858
    Likes:
    1,082
    I've been speculating for years that many, if not all, subsets of this illness may have been caused by vaccines. I believe that the medical industry, and it's cronies in government, are entirely afraid of the ramifications of something like this. That is probably why no serious effort is made to research it and why patients have been demonized as being psychosomatic. The truth might just subject them to financially crippling lawsuits if it was ever revealed.
     
    ahmo and natasa778 like this.
  5. undiagnosed

    undiagnosed Senior Member

    Messages:
    220
    Likes:
    331
    United States
    Good for her. There's going to be more and more cases of people doing this kind of self diagnosis. From the excerpt, it says:

    Amelia wrote a 1,700 word account of her clinical history, attached the medical paper and her conclusions with it, and sent it to Professor Russell C Dale, a paediatric neurologist at the University of Sydney.

    I'm curious how she discovered this professor. That's what I'm struggling with currently is finding a researcher who will engage with me.
     
    Izola likes this.
  6. Cheesus

    Cheesus Senior Member

    Messages:
    1,244
    Likes:
    5,579
    UK
    I think he was possibly the doctor who made the initial diagnosis on the other patient and subsequently wrote an article about it. At least that is what I infer as the initial patient was in Australia and so is this professor, whereas Amelia is British.
     
  7. undiagnosed

    undiagnosed Senior Member

    Messages:
    220
    Likes:
    331
    United States
    Ah, that would make sense. Thanks. That actually gives me an idea for how I may be able to better target researchers.
     

See more popular forum discussions.

Share This Page